Drawing by Ayla Probst (10 years old) A surprise gift in the mail for me today.
Today was a good day!
I’m sitting here after a glorious day. A day most people take for granted.
This week we celebrate Thanksgiving in the US. It is a time to reflect and be thankful.
Today I am thankful for good days!
Most people wake up in the morning, and simply start their day, without a thought about it. The first thing I do when I wake up is take stock of how I feel, and decide if I can make it to the bathroom alone or if I need to call for help. Today I awoke to find myself feeling…good…I mean really good. This is so unusual lately I was surprised, and very grateful because Stuart wasn’t home. I got up, did my morning routine, with aw. As I walked down the stairs I realized I hadn’t been downstairs since last Thursday, and that wasn’t for long.
I had a little to eat and decided to sit out on the back porch and enjoy the sun. Today was a beautiful day!
Stuart was home soon and surprised to find me outside, and feeling so good. Not just OK, but good. I wanted to get out of the house, but wanted to make sure I didn’t over do it again. We decided to take a drive, but right before we left I started to feel a little off. Head a bit swimmy, so I decided to take some medication, just in case. So we jumped in the Bug and put the top down. We drove to a town near by, stopped at a drive in fast food restaurant, and had a treat. We came home and I decided I still had some energy to spare, so we cut back the dead flowers, and I cut the herbs I could save after the last frost and hung them to dry.
Stuart went to the mailbox and I was so tickled to find a card from one of my favorite people. A friend of mine’s daughter, Ayla, she’s 10 years old. They live in Tucson so I rarely get to see them, but for every occasion she sends me a card, normally with a drawing included. She knows how much I treasure her drawings. You can see her drawing at the top of the post. Yes, that is a penguin in the hot air balloon. Ayla, loves penguins. Isn’t she the best?
Yes, you are right, it was last Monday that I felt so good. So what is it about Mondays? It’s not like my weekends are any different from every other day. I said to Stuart, “So, am I just going to feel good on Mondays?” He said, “No, you’ll feel good tomorrow, you have an appointment with Dr. Kaylie, and you’ll feel good on the 5th, you have an appointment with Dr. Gray.” I just sighed, knowing he was probably right.
Isn’t that often the way? We can feel like crap for the longest time, then the day we go see the doctor, we feel better.
I hate to even say this, but I kind of wish I would feel bad tomorrow, so my doctor could see what I’m going through. *cringe* I know I really shouldn’t say that out loud…or even write it.
Here’s to never taking a good day for granted, and enjoying the small things.
I decided that was enough. I’m not going to push it.
This PFAM carnival is hosted by FibroDAZE, and her prompt is –” when you have made some sort of peace and are coping with the chronic illnesses you do have and “life” throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?”
Well, this is a doozy of a topic isn’t it?
How many of us have been diagnosed with something chronic, only to have another chronic illness added on to it, then another..then another….??? (I have a whole list, just look at the Page titled My Ants that Bite.)
This has happened so many times to me now I’m usually relieved to be given a name to something I knew was there. When I got the Meniere’s diagnosis, it was scary, but it was almost liberating. I felt validated. No longer was I dealing with just a bunch of symptoms, it had a name. (I have a few friends who have an illness with no diagnosis. This is much harder to deal with, I think, than those of us who have a diagnosis (or many diagnoses).
I had a new diagnosis added on to my list in March, I also went through a 5 month spell of having a reprieve from one of my most debilitating illnesses only to have a relapse about 5 months ago. How have I handled this?
Truthfully, I cried, I bitched, I was devastated, I collapsed in my husbands arms, then I took a deep breath, pulled myself together and reached out.
I dove into my blog and called on my friends here who have been with me through the ups and downs, I gathered them around me like a nice warm quilt and I let it all out. They listened, and supported me. They offered advice when asked, comfort when needed, and a swift kick in the butt when I was wallowing too much. : ) I’ve been very lucky here to find such a supportive group of people who really “get it”.
I am a strong believer is knowing everything I can about what is going on with my body, so I research, and I find more people who have experience with this and compare notes. I take what I think will help me, and leave the rest. (this is tricky, but there are so many people out there trying to take advantage of desperate people with chronic illnesses, we have to be careful.)
I also see a therapist who specializes in helping people deal with chronic or debilitating illnesses. My husband and I see her together, this has helped us so much, I just can’t begin to say how valuable this has been to us.
My advice?
Digest: First take time to absorb the information, don’t let it overwhelm you.
Think: How is this going to change my life? Can knowing about this make it better? (my new diagnosis in March was Fructose Malabsorption, by changing my diet, I am able to make things better.)
Seek: Look for others who have similar issues and compare notes, learn from others who have been dealing with this for a longer time. Look for as much information on the subject that you can. The more you know the more prepared you will be to handle what comes your way.
Build: A strong support system to help you with this new challenge.
Re-evaluate: Is your life going to change? What will this mean? Do I need to make a different plan for dealing with things? Will my diet change? will my ability to do things change? ….
Make a plan: This may take a while, depending on what your new diagnosis is, or in my case how severe my relapse is, a plan is needed so we won’t feel out of control. Again, reach out and ask other’s how they handle certain situations.
Support: I know I mentioned this before, but I believe this is one of the most crucial aspects of dealing with a chronic illness. We need support. Do not hesitate to get professional support when needed.
If needed, get a second opinion.
After a long battle with myself, fighting every diagnosis, refusing to believe I couldn’t just be fixed, I realized that my life wasn’t going to turn out like I planned. Things would have to change, and I needed to let go of some of those old expectations. No, my life isn’t what I expected, so I’m changing my expectations. This is a fairly new idea for me, but one I’m clinging to and repeat often. Not what I expected? Expect something else!
Now if things come up it’s much easier for me to change accordingly. This was not an easy thing to do, and I still get stuck, and have set backs and pity parties…but it’s easier than it used to be.
Every day I try to say something I’m grateful for in my life. Some days I say the same thing as I did the day before and the day before…perhaps I can only think of that one thing, or that one thing is very special at that moment, but I can always think of at least one thing.
Lastly, always remember, you are not defined by your illnesses!
My Headache Guide, showing manipulated photos of me to help the doctors understand my pain. I shared this with Dr.D today and he asked to keep a copy. I'm glad he understood it, and thinks it works. My therapist saw most of it on my other blog, and she loved it, so I decided to print some out.
**I’m sure I should proofread this, and fix many things…but you are getting my stream of consciousness, as it came out, at the wee hours of the morning, when I can’t sleep….if it’s too crazy, just let me know…and I’ll do something with it.
Let’s see, what has been happening since my last post, what do I want to share? (other than the headache pain scale)
I know!
I had an appointment with my psychiatrist a couple of weeks ago, he feels I need more of an antidepressant. Given everything that’s going on, he’s concerned the depressive side of my bi-polar disorder will rear its ugly head. Trouble is, I’ve tried just about everything. I usually have side effects, or some drugs don’t work with others I have to take, and some just didn’t do much. So he put me on a brand new antidepressant on the market…Viibryd. (I think I may have mentioned this.) I took it for 4-5 days and had the most violent diarrhea ever! As I told my doc today, “I had to have an ice pack between my cheeks.” He looked so sad.
This is another doctor I love. I’ve been seeing him for 8 or 9 years. Today he looked at me and said, “I think you need to fire me.” Uh, NO! I asked what could someone else do that you haven’t done, and you know my history. I told him, I think all my emotions right now are valid, he agreed. I said that I believe you really have a problem when you are having in appropriate emotions to things. He shook his head yes. I also mentioned that he told me once that I’m so in tuned to my body and my bi-polar illness I can tell immediately if I’m going to have trouble, if I’m the slightest off, and I call on him. He again, agreed and said no one else he sees will do that.
Then he looked at me, and said, but I care so much for you, I want to take the edge off of some of this pain, and don’t want you to end up in the deep end. He said, how about a second opinion…I hesitated. (I’ve really had some horrible experiences with psychs in the past, and am very afraid to go see anyone else. I’ve known Dr. D for so long, I call him by his first name, I know his wife, I’ve met his child….I was with him when he had to deal with his brother’s suicide. (they do think it was accidental. He was very sick and on a lot of medication…and simply took too much.) But that takes a toll on someone. And he didn’t have to tell me. He’s open and honest with me. (I don’t think he’s like this with everyone, but we’ve been together a LONG time, and have a very special relationship. He understands with me, that I’m better with a professional psych person if they share some of them with me. If they trust me with that, then I can trust them.) I don’t want to see anyone else!
So we compromised. He got my permission to share my file with another doctor there in his office and ask if they have any suggestions.
(during all of this, I actually had to lie on his couch because I was so dizzy, had a headache, and my ear was roaring….I actually thought it amusing that I actually lied on the psychiatrist couch…how Freudian.
Oh, I did tell him, if we find out I have high pressure he could put me back on Topamax, I might be stupid for a while, but at least I’d lose weight! He mentioned when I got there that I’d gained weight…I said “that’s not nice.” He looked taken aback, then I laughed. yeah I know..but not really, it’s just moving around since I’m so sedentary..losing muscle mass so the scales are so bad, but the look…is not pleasant. (I looked in the mirror today and thought, “are you really sure you aren’t pregnant?”….oh, I remember you must have sex for that..so guess not!)
Dr. D decided to raise the dose of the Lamictal I’m taking. It may knock the edge off.
So what do you do when a doctor that you love and trust, says they are stuck with you?
I feel certain we’ll work out something. But I can’t imagine leaving Dr. D. When we moved to California for a couple of years and I had to see someone there…Oh My Goodness…that woman was a quack. She saw people in a group. Uh, not ok. And she prescribed Seroquel for me, just took me off of things that were working….Here this is better, it works for both the ups and downs of bi-polar disorder. Yeah, it made me sleep ALL THE TIME…so no I wasn’t manic or depressed, I was doped out of my brain! And she didn’t want to take me off of it! Not cool. I asked to see someone else in that group..he was better, but not D.
I have much more to talk about.
Like, how I’m not dealing that well with being bed bound! How my headaches are worse. How I hate being such a burden. How I don’t like my marriage like this. How to keep a caregiver from burning out, or letting you become their everything?
Let me share the name of my new possible diagnosis….This is not definite, but it’s a mouth full….Intercranial Hypertension with Spontaneous Cerbrospinal Fluid Leaks. Ummm, yeah, what they said.
Still seeing Dr. Gray on the 17th, have asked for something more to help with my headaches for the next 10 days!
Still drawing, and creating something every day.
need to scan some things and put a post on my other blog. (think you’ll like my NeoPopRealism style self portrait…I think she’s a hoot)
I’m not sleeping well. Look, it’s 5am! Still haven’t been to sleep. I have to wait until I’m so exhausted, nothing could keep me from falling asleep, then I can sleep. Why? I’m scared to go to sleep. I’m afraid I’ll wake up feeling even worse. Or that I’ll die in my sleep. (this fear started after I had the drainage from my ear recently because of the infection. I was so afraid it was CSF fluid.) I’m really hoping this will get better after the next appointment. Even if they can’t fix everything at once, I just want to feel better….just a little. I’m not asking for a lot really. It’s ok, if I never can drive again, or work, or get a foster child, or have a garden…yes I want time, but I can deal without them. Just let me be able to do something out of bed, and not be in intense pain the whole time, or feeling like I’m going to fall down with every step.
(I actually used my walker in a store the other day, I’ve never used it out of the house before. (I just used Stuart or the cart to help.) I was proud of myself for using it, but it was difficult, and it’s nearly impossible to back up! Think I might try to use the store’s little scooter next time…but that will probably make me too dizzy.
So we have a few things to talk about.
I think I’ll talk about caregivers next time. How they feel, how to help them, and how we as patients feel because we have to use them. (I’m trying to get Stuart to write a guest post about this, and would love is anyone else would be interested. If it would help, I could come up with a list of questions.) Perhaps, this will need to be a series, not just the next post.
OK, I’ve stopped my ramble for tonight/this morning. Feel free to tell me to never post while being this sleep deprived again!
Yesterday was one of those really, really bad days.
It started off fine, I went downstairs, had some breakfast, was watching some cartoons. And the noise in my ear started, and got louder, and louder. My head started pounding. I went to lay down, and it just got worse and worse. I was screaming to please make it stop, that the doctors don’t understand, that I couldn’t stand it. I was dizzy, and felt like I was going to throw up at any moment. I told Stuart, if this didn’t stop I would make him hate me, because I’d have to stop it. I knew then that if I had a gun I would have blown my head off just to make it stop. (NO, I don’t want to kill myself, but the pain and noise was so unbearable. If you’ve never been there you just can’t imagine.) I’ve dealt with horrible, mind splitting headaches, and I’ve dealt with the deafening tinnitus. (yes, I know that’s a strange thing to call it, but if it was coming from the outside of my head instead of inside, that’s how it would feel.) But dealing with the two together, is just too much!
It hurts me so much to see my husband wanting desperately to do something to help, but he can’t.
I took two Vicoden (Hydrocodone), a Valium, and Phenergan. Finally, it started to ease. In no way did it go away, but I wasn’t writhing in pain any longer. We propped me up on an incline to try to ease my pressure. It seems if I’m too flat it hurts worse, if I’m up right it hurts worse, but being on an incline helps…sometimes.
I wrote an email to Dr. Gray last night. I wanted to make sure she knows how desperate I am right now. I sent a copy to Dr. Kaylie too.
There has to be a way to make this better. I was so much better for so long. I believe, I can be that way again. But I know now, that I will never stop living in fear that it will come back. On any given day, at any time, I could have my life fall apart…over and over again. Dr. Kaylie calls it “Random Punishment”, you never know when it will happen, but you know it’s coming. I’ve had it explained to me, that it’s similar to serving in a war. You aren’t under fire all the time, but you are constantly aware that it could happen at any moment. That does things to a person’s mind. Talk about anxiety!
This piece is still in progress, but I felt like it was appropriate for today.
So I will have the courage to enjoy every moment I have when I’m not enduring that hell. I will never take a day for granted. One day at a time….just one day at a time.
I thought some of you might be interested to see the results of my past two hearing tests.
There’s a lot of information there. The biggest thing that makes it hard, is the word recognition. They simply can’t fix that with the hearing aids. So, according to the latest test, I’m recognizing about 84% of the words I’m hearing in my right ear…and that’s if they are at the right frequency. I’m not deaf! Some things are difficult, but hopefully this is temporary, and if not…I’ll learn.
We still have much hope that things will change. My doctors believe the hearing in my left ear will get better. We’ll just wait and see.
I know many of you are concerned for me right now. I’m doing OK. Really. It’ll take time to process everything Yes, my life’s plan will need to change. I’m trying to look at things differently, not looking back and thinking of what I’ll miss, but look forward at what I can accomplish.
Last night I was writing and drawing and thought I’d share something I wrote:
Journal Entry Sept. 8, 2011
What started me on this journey?
The need to write and draw is now overwhelming to me.
How did I ever give this up? How did I lose so much of ME?
***Hey You!***
Yes, You – That girl you look at in the mirror every day —
Welcome Back!
p/s Please don’t leave again. I’ve missed you.
Thank you all for so much for all the support. Yes, I’m going through a rough spot…but with the support I get from you…my dear friends…it’s easier.
I never dreamed I’d feel such an out pouring of support from people I’ve never met in real life. Many of you have reached out to me when I’ve needed it most. I only hope in some small way, I can give to you as you have given to me. thank you.
Picnic with Ants 